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_Misty_

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  1. Hi Laure. Would you be willing to talk to me privately about your experience at Rothman?

  2. Thanks, laure! July-Fireflies- do they offer outpatient at Rogers? I'm not sure if she's currently severe enough for inpatient since her weight seems stabilized.
  3. My daughter is in her 3rd severe flare of PANDAS, now age 12. She has lost 17% of her body weight and was an inpatient in the hospital last week, although they didn't place a feeding tube as the nutritionist recommended. She is now eating a larger quantity of food, but only 3 or 4 items due to fear of allergens. I did an intake with the Rothman center yesterday and am waiting to hear when they could get her in. I'd love to hear your experience there or more about Rogers... I didn't even know it existed until today. What is it like doing the homework each night? We're trying to figure out feasibility of taking our whole family or if that would be too distracting for her.
  4. Chemar- thank you! Ibuprofen hasn't shown much benefit. She's halfway through the steroid taper now and she says her OCD is better, but her eating hasn't improved. Her mood seems improved most of the time, but when she gets irritable it's like you lit a firecracker. I'm afraid she's just so far into this flare and it's so intense that the steroid may not do it for her. Our pediatrician and NIH are pushing for hospitalization but we're holding out hope that she will improve. Her weight loss is so severe they are considering it a crisis. I would go tonight if I knew they would believe it's PANDAS and give her appropriate treatment. I just don't have that confidence. And to top it all off my other daughter seems to be entering a flare. She's never been officially diagnosed, but our pediatrician had lots of labs drawn today. I started her on Aleve twice per day a few days ago. I'm so exhausted.
  5. Original poster here. Oops! Didn't mean to put this under tourrette's and tics, meant to have under PANDAS/PANS but I don't know how to move it.
  6. Long story short, my daughter first developed PANDAS at age 6. Amoxicillin worked wonders and was continued for several months. Our happy world crashed down again about 6 months later at age 7. This time we got into the clinical trial of IVIG at NIH. This was in 2013. My daughter ended up getting placebo, but she recovered on her own. Over the next 5 years we really didn't have to deal with any severe PANDAS symptoms. There were little blips here and there, but life was good. A few days after Christmas this winter she started restricting her eating again, but we naively believed it would just be another blip since we weren't seeing any other symptoms to speak of. Well, after a few weeks she had lost about 15 pounds and we consulted our pediatrician. He couldn't find anything wrong that would have triggered this, but agreed to double her dose of amoxicillin. She showed some improvement, but then had to get two teeth pulled. She started going downhill again.I don't know if it was related to the teeth being removed or not. By this point she was showing more irritability and aggression. Our pediatrician made a referral to a psychiatrist, which hasn't happened yet. Anyway, due to the duration of her symptoms (10 weeks now) and severity of weight loss at about 15% of her start weight, our pediatrician is pretty motivated to get this fixed. He has spoken with the team at NIH for treatment advice and added a second antibiotic and an oral steroid. Here we are 5 days later and we just got the first dose of steroid in her because of medication/allergy fears. We've never done anything beyond just an antibiotic so I don't know what to expect. I am so hopeful this will be our answer so we don't have to proceed to IVIG, but we do have our amazing pediatrician's support if it comes to that. Can anyone tell me how it went with a steroid for their child? Improvement/side effects experienced and approximate timing? Thank you!
  7. That's interesting about the whispering. My dd hasn't ever stopped talking, but she sometimes talks extremely quietly in a flare.
  8. Thanks, ladies. I called DH home from work today to give me a break. I had just had enough. I got a nice long nap and he straightened up the house. When she gets in a behavior episode it may last just a few minutes or up to an hour, but then she just snaps out of it. She may swing back and forth frequently, though.
  9. I'm hanging on by a thread now. I guess she is overall a little better, but the behavior crap is really old. Her OCD is better, maybe 40%, but the behavior stuff is just annoying. I know it could be much, much worse. It's been two weeks today from the first day of infusion and we very well just need more time, or possibly she got placebo. Her tics are gone, at least. This morning she is doing her math and had a problem that said Todd is 15, Steve is 8. How much older is Todd than Steve. Her answer was 4-8=6. What. She is normally very bright. I think it's just disappointment because things were looking pretty good the first few days. If she doesn't get better I can't imagine waiting 4 more weeks for a chance at IVIG. I really want the old her back.
  10. I don't have any links to official info. I searched quite a bit a while back. My daughter's speech is affected, too. I mentioned it to a doc at NIH involved in the PANDAS study and he wasn't sure about it, but said it might be a form of age regression since my daughter stuttered when she was younger. When Dr. Swedo met my daughter she described it as stammering. It gets very bad at times and she just gives up trying to get the words out.
  11. Thanks everyone. Her OCD is still doing better than before we went to NIH. Her behavior has improved a little, but it's still not normal. She's been falling asleep a little better than before. It seems most have trouble with that after IVIG. Hmmm. We are a week out now. Hopefully we will have a clearer picture in another week. They did tell us the possible side effects (many, many times) and they call us every other day to see how she's doing. Because of it being research they go overboard making sure you are informed and ask if you still consent at every step. They told us to push fluids before the infusion and they followed it with a bag of fluids both days. They didn't tell us to continue pushing fluids in the days following, though. I emailed them on Tuesday to ask about her terrible behavior and they wouldn't tell me if it could be from the infusion. They just said they had not seen any patterns with the kids in the study. I suspect they don't want to tell me anything that would sway our opinion on whether she got it or not. The nurse told me if was probably fatigue from travel - I know that's not the case. It is extreme behavior. Another person in the study said it might be disappointment from not seeing more improvement. I don't think that's it, either. She's only 7. I don't think monitoring for improvement is on her mind and influencing her moods daily.
  12. They left her antibiotic as it was - amoxicillin 500mg twice a day. They didn't want to rock the boat by making any changes. I don't think it matters too much to them which one they are on, as long as they are being protected from strep reinfection. Edited to add...I don't think they wanted to tamper with her symptoms because of the anti-inflammatory effect of beta-lactam antibiotics. If she was already fairly severe they wanted to keep things the same to get a true picture of whether she gets better or not. Today was a really, really tough day. Her OCD is considerably better - it's probably at least 50% down...actually more than that. Her behavior is AWFUL. She was very hateful and aggressive today. She threw her socks and tennis shoes at me while I was driving. Her friends in her homeschool co-op kept looking at me, visibly confused with why she was being so bad. She stayed at my parents' house for a few hours this afternoon and was great. The minute she came home it all started back up. I am just really tired. I so, so hope this is "turning back of the pages". She's at the worst behavior level ever- the same as last summer when this all first started.
  13. Thanks EAMom and thenmama for sharing your experiences. We got home this afternoon and her OCD has been pretty bad again. She developed a new compulsion this week and it is sticking around. We've seen a couple behaviors we haven't seen since last summer. Hoping we're turning back the pages! One of her tics seems to be much better (maybe gone - too soon to tell) The other has been pretty mild today. She's had some pretty bad behavior things - anger and aggression and overly exuberant laughing. She had some nausea and stomach pain this morning on the way to the airport. I can't tell if that was anxiety about travelling or a possible side effect. I'm anxious to see how things progress now that we're home. I will be keeping a log of her symptoms - I've been doing that anyway since this flare began. I think the only thing they really want is for us to keep a log of her antibiotic doses.
  14. Thank you! It was surreal for my daughter to play cards with Dr.Swedo! We are number 28 out of 32 and the study has been going on for 2 yrs. It will depend on how long it takes to get 4 more kids in and then the 6 months of following them (at least that long- I'm not sure if they'll wait until the year mark). They did tell us that every child that has gotten IVIG so far improved.
  15. DD is 7 and we just completed the first visit in the NIH study on PANDAS. There is a 50/50 chance she got IVIG. We won't find out for 3 months what she got, but if she isn't better in 6 weeks they will give her real IVIG. What should I be expecting if it was the real thing? She had one brief episode of dizziness and nausea within an hour or two of the 2nd dose completing and a couple of hours later had some shivering. The day after (today) she had a bad headache, but it was brief. Today (1st day after) she has had a few episodes of extreme hyperactivity. She's had huge mood swings, too. Her OCD for the most part seems improved, but it still has gotten pretty intense in the evenings. It's hard to know how to compare her symptoms to a normal day because life has been anything but normal this week - the world has revolved around her. She's had every fun activity imaginable available to her at NIH and we've been very, very busy causing extreme fatigue. The doctor here said to give it at least 2 weeks. It's so hard to be patient not knowing if she got IVIG or not.
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